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Climb Ev’ry Mountain

When I was a young lady, I inherited the Sound of Music soundtrack on vinyl. Of course, much like most of the world, I had already seen the movie a million times and knew all the songs before having access to them 24-7 in glorious, crackling, hi-fi sound. The inspirational message of “Climb Ev’ry Mountain” was not wasted on me. I felt it in my heart, and I aspired to do just that in my life. Little did I know at that time, that the mountains I would be climbing would not be chosen by me, and the journey would not be full of rolling grassy hills, wild flowers, or twirling nuns.

When Pepper was a baby, and I could carry her in a sling, I would spend glorious spring and summer mornings toting her up our local hills and “mountains” to get a view from the top; from the very place I knew she belonged. The hills were indeed alive and idyllic. The mountains have since changed, and in some ways, they have become far more challenging. With that, Pepper and I climbed our first mountain together.

It started last year when we enrolled Pepper for kindergarten. Because of Pepper’s extensive special needs, we registered early, and gathered our supports before our series of meetings with the school board. Imagine our surprise when being told on our very first meeting that Pepper’s emergency rescue medication would pose a problem for the school board. Pardon? You mean this little pill that gets administered inside her cheek when she is in an emergency situation, when she has lost consciousness, and continues to seize, when 9-1-1 has been called, and time is of the essence, when brain death may potentially occur, could pose a problem to you? I’m sorry, what? Further meetings resulted in suggestions that we switch to a more “administration friendly” medication, so as to avoid any potential “labor code or board policy issues”. Though, naively I was willing and prepared to co-operate fully in order to have Pepper set up for school in a safe and orderly manner, I was not expecting what came next. The new medication, which was to be administered nasally, would need to be drawn up with a syringe for each administration. Additionally, our insurer classified this medication as “in hospital use only” and would require special permission from the neurologist before the medication would be covered. Finally, (and this one really hit home) the nursing agency responsible for training school staff to administer this medication flat-out refused to train the staff unless Pepper had been exposed to it at least three times, without having any sort of reaction. They promptly closed their files and asked us to call them when Pepper had safe exposure to the new medication. Labor day rolled around and Pepper was not starting school in the foreseeable future. That was, until I decided to investigate which policy was preventing Pepper from entering the school system. Why? Who said so? It was at that point that I started to call all hands on deck. I went to the Principal, the Superintendent, the Director of Education, the Superintendent of Special Needs, our local MPP, the Minister of Education, our local Epilepsy support chapter (Epilepsy Halton Peel Hamilton – shout out to them), a support group of mothers with children who have Epilepsy (through Epilepsy Halton Peel Hamilton), Pepper’s therapy team at Erin Oak (shout out to them), her daycare, her doctor, my doctor, my lawyer friends. Anyone who would, should or could have a stake in this situation, I contacted them for their input, their help, and their time. I am grateful for having done so.

To make a very long story short, with everyone’s help, with a little patience, perseverance and a lot of respect to the school and board staff who are not mal-intended, (they are just doing their job, like everyone else in this world) we all worked together to get Pepper safely in school.

Pepper started school on October 1st. She entered with a bang. Having fallen asleep in her wheelchair on her way to school, she woke up to 30 little smiling faces and a barrage of noise (one would expect from a kindergarten class). It was then that Pepper had her first in-school seizure. Welcome to kindergarten Pepper and welcome to our world, Pepper’s school!

Our advocacy did not stop there. It shouldn’t stop there. Pepper is not the only child with Epilepsy. Pepper is not the only child with special needs. There will be many more after her. Those children may come from single family homes, with a parent who can’t take time off work to advocate for their child. Or their parent might be forced to chose between feeding and sheltering the rest of the family or advocating for an education for their special needs child. In Canada. In 2015. Believe it or not. Those parents may not have the benefit of strategic contacts, or the knowledge to research the necessary channels. They may not even speak English, and may feel bullied and overwhelmed. Something needs to be put in place for those families. A policy, or law needs to be in place for those children entering the school system. It’s as simple as that. – Ha ha, simple..

This year, we climbed our first mountain. There will, no doubt, be many more to come. We will keep climbing even long after we find our dream…

1 Comment

Hi Steph – I came to know of your blog from a FB mom’s group we were once in together. I don’t remember which one (possibly Healthy Moms Toronto) but, damn, do I remember Pepper and your blog – your willingness to share your constant-uphill-battle of a beautifully crafted life.
When I started reading your blog, I was a mom of one little boy. Truthfully, I have never been great at following blogs as whenever I sign up, they get sent to the folder where all my other “social” stuff goes (gmail, bah) and often I just “delete all” in the battle to get down to “inbox:0” (which I’m constantly losing). So, I haven’t checked in for quite a long time – maybe since Pepper was 18 months or 2 years old. I’m not sure why, but something made me think of her today and I decided to Google “Pepperlepsy” and have a catch up. The last time I checked, you didn’t have a diagnosis for little Miss and I see that you have one now; which to so many parents means that you can “up-level” your advocacy game-face. And, boy, that is exactly what you have done.

In Feb of 2015, we welcomed my 2nd son, Marshall to our lives and were overjoyed! A feeling that lasted about 30 secs – 1 minute and was quickly replaced with devastation that no mother should ever have to put into words. They put him on me; I looked down and remarked “Huh – he really looks different than his brother, don’t you think? And why is there amniotic sac in his hands?”
Midwife: he seems to be having some trouble clearing his airway – we’re gonna check him out
(about a minute later)
Ummm… so, did you have all the anatomy scans? Because we are noting some abnormalities with the placement of his eyes in relations to his ears… (** cue the sounds of whooshing as we fell into and bottomless pit of despair.. falling.. falling… no bottom in sight)

Yes, we did the anatomy scans – all of them – every single one… but nothing about his condition was ever noted. In fact, I had the most boring pregnancy you could ever imagine. Not one complication, not even a day of morning sickness. But, boy did that come back to haunt us 1000-fold.

We spent 9 days at Sick Kids NICU with our little boy and his fused fingers, fused toes, fused skull plates and “sunken” face, with eyes that didn’t shut when he slept, meeting every single doctor and from every team imaginable and finally met with a genetic counsellor who confirmed he had Apert Syndrome. Apert Syndrome?? What the f@ck is Apert Syndrome… google google google… OMG. How did this happen? HOW.DID.THIS.HAPPEN.

All in all, we spent 70 days at Sick Kids in his first 5 months of life getting to know everything we could about Apert Syndrome and coming to terms with now being the parents of a medically complex child and learning what it meant to advocate for your child. Holy shit. What an uphill steep learning curve it has been.

Marshall is 19 months now and has no idea he is supposed to have limitations; he has had 3 surgeries in his short life – two facial/nasal reconstructive surgeries and one major 8-hr hand reconstructive surgery which successfully gave him 10 fingers!! He had more surgeries on the horizon but not for a while. So we are enjoying this time and trying not to think much about “what’s next for him”.

I’d love to share our blog with you, if you’d like to take a look. If you are curious about Apert Syndrome, Google is not very friendly to our community but it’ll do in a pinch.